Battling Chronic Pain Like an Athlete (because she is one)

Katie O’Leary has been a frequent contributor to the National Pain Report. Here is part one of an interview we did with her recently about her recent battles. You can read part two, here.

1. You have been diagnosed with CRPS…what’s that been like?

Katelyn O’Leary

It has been a rollercoaster of emotion, sacrifices, failures and successes. Sometimes the failures are monumental or tiny, whereas the successes are small or overwhelmingly wonderful. The most important lesson I learned is that doctors are human and they don’t always have all the answers. While my CRPS was diagnosed within 6 months, the circumstances that caused it are actually quite unique. I had FAI. (Femoral acetabular impingement) basically my right femur was just a little too long and it rubbed against the ball joint of my hip and tore the cartilage. I had hip surgery to fix this, and it caused my CRPS. The original injury occurred because I was a college athlete and played Division I rugby for 4 years. Most women I know who have this are a lot older, have the disorder in their feet or arms, and they are married. I would say that has been the hardest part – dealing with this disorder without my family and without someone to lean on (no pun intended) has been emotionally taxing. And because my emotions and state of mind play into my illness, I have to try and stay calm – otherwise I could trigger my gag reflex (flare ups cause me to vomit and when I get emotional my pain increases) and then I end up in the hospital from dehydration. But because I have to rely on my own wits in the doctor’s office, I have become a stronger advocate and I articulate my needs with more confidence and intelligence. It may ruffle a few feathers, but my health is of the utmost importance to me, and if a doctor doesn’t like all the questions I’m asking – too bad! I will not be giving up. As I always say, my doctors may know best, but I know my body better.

2. As a former college athlete, you’ve attacked it with enthusiasm. What have been your best moments and your worst moments?

As a college athlete you are taught to fight as a team. You look to the people next to you and formulate a plan of action and you support each other. I think for me, my best moments have been the times I’ve been able to advocate for others with my writing and with my experiences. For example, I wrote an article about my negative experiences with TSA, I was invited to speak to the disability department at the TSA on the phone – and that was incredible.

My worst moments have been my own struggles with denial, anger, and anxiety. All three have hobbled me at one point or another. I have felt so much anger that at times it has been explosive and unhealthy. The pain is so overwhelming, and I feel so much shame and sadness that it affects my personality and mood, but I have learned over time that I have to stop comparing my illness to other people’s. I have a nerve pain disorder, and while I have family and friends with nerve issues, none of them can relate to what I’m going through. But I am finally learning to control that.

6. You are optimistic…despite being hospitalized et al, what is your feeling about the next phase of your life…

I am hoping I can return to working full time soon. I cannot put a date down or a specific time, but I am hopeful. Some days are better than others. What keeps me going is the promise I made myself, which was to live an extraordinary life and to follow my dreams. I believe I’m on the right track, and while this may be a harder race than most, I am limping my way around the field. I just hope I can make it past the finish line.

Part Two of our interview with Katie will run on Thursday (Aug 31). The National Pain Report is welcoming patient stories in September as part of Pain Awareness Month.

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Great narrative! Never quit! At the ripe old age of 33, ( now 59), I had a “mid life crisis”. I liked staying in shape. Not vanity, just required as a blue collar worker. owner of a small hands on business. I took up weight lifting, body building. No steroids,no gym, just a weight set at home in the spare bedroom. Our 2 small sons came…..first.

After a few months of this activity, my wife had taken notice and began further reading books on body building, body sculpting. She was never an athlete per say but, she had the perfect “muscle length” and other physical attributes to become sculpted very rapidly. She used no steroids, only proper nutrition. No gym membership, only acquired knowledge by reading about the activity and a weight set, in our spare bedroom. It was only a 3 bedroom house, and the boys were so young they still bunked in the same bedroom.

She succeeded wildly. Put me to shame. After only a few months of commitment, she looked great. She had determination. Through her daily building routines she never for a minute forgot that she was a mother, first.

After about 3 years of continued shaping, on both our parts, she looked “pro”. Not over built, retained her femininity but still she looked great. We entered into a local body building contest. We thought it was only a local competition. It turned out to be the eastern seaboard body building contest at Lenoir Rhyne College in NC. Only a 20 minute drive from home.

She was nervous at the competition but, excited. We took both our children which were almost school age by this time. There were some “monstrous” looking women and men at this event. The competition began and I quickly realized that she had the “best” most proportionate sculpted body of ALL the competitors. There were 3 classes. Lightweight, medium weight, and heavy weight classes. She was a lightweight competitor, at only 4′ 11″ tall. She easily won her class, first competition.

It came down to the three weight classes to “pose” for the overall title. Not being biased but, she looked best. A local competitor which looked great was there.. She was in the heavy weight class and had competed for years. She “won” the overall title. My wife was still extremely happy, as we knew for the first, last,and only competition she was to ever enter had achieved success without even winning the overall title. She was offered the opportunity to be taken under the wings and to train under a competition title owner. I believe it was the current (at the time) NC title holder. It was considered by her but, her commitment to parenting and being a wife, came first. I knew she was a winner and could have done very well, professionally. She knew it too.Not bad for her first, last, and only competition.

Diagnosed at 45 years old, (now 57) with fibromyalgea and lymes disease, her, what had become normal fitness routines became drastically altered. No longer to be able to lift, she still has not quit being all she can be. Says that she has never regretted not “going pro” but, sometimes I wonder. She went against the odds, and prevailed a winner. She done it in a 12′ by 12′ spare bedroom, no drugs, never neglected our children, attended all functions socially for our kids, all while being the best wife a man can be blessed with. She is still….my winner. She has never “quit”. at being the best, at what she can do. Unfortunately with the new “guideline” for doctors, she suffers daily. True story!

The athletic mindset is critical for CRPS Patients! As a former competing equestrian who spent her time kickboxing, mountain climbing, snowboarding and surfing, CRPS can’t be faced without applying the althlete’s focus, drive and single-mindedness. I often describe this disease like a mountain, which we are half-way up, climbing in our tee shirts. We cannot get off this mountain and we have to decide if we are going to keep climbing to the top or falling off. When ever I lose my grip on this mountain, when I allow the feeling of high altitude possess me I can so quickly be overwhelmed. The frozen toes and fingers, the trouble breathing, the infernal burning fire raging in my spinal cord. I transform these un pleasing sensations into elements which drive me.
No one can see this mountain I am on. not even my doctors. Only my fellow mountain climbers know the nature of this craggy foe.
When we respect this disease and place our battle in perspective we understand the great challenges we face are victories each day that we wake up and stand in victory pose! When the burning pain becomes a source of incredible drive we discover the depths of our strength. Our mountain makes us tremble and gnash our teeth but we can survive it with singular focus and willing our bodies to reconnect to our minds. We will never ever give up.